Re: Re: 2015:a cochlear odyssey

[Guest guest]

As far as closed captions, canes/dog guides, etc. are concerned, universal

access does not cure the attitudinal barriers we face here in the States and

worldwide.

Comparisons in these matters are innately subjective, but I have a strong

opinion that being profoundly hard of hearing (aurally challenged???) is one of

the most onerous handicaps a person has to deal with.

Most people would never think of insulting expecting a paraplegic by asking him

to climb a set of stairs or to do any one of thousands of things " normal " people

can do. But there is no visible " sign " of being profoundly hard of hearing

(unless they see your hearing aids, in which case most assume that, with them,

you hear just fine. So we deal constantly with people who expect us to do the

impossible, like comprehending what a fast talking person is saying, or

understanding what the weatherman is saying because they NEVER caption their

part of the news program. (I met with the CEO of a local TV station a couple of

years ago. He took me on a nice tour of the station and then said he " would

try " to get the weatherman to write a script. It never happened.

Only a few days ago a guy I was trying to do some business with on the cell

phone sarcastically said " SHIT! " when I asked him to repeat what he had said a

couple of times. And he KNEW I was quite hard of hearing because my wife had

told him so BEFORE telling him to call me. Then there's the cutesy-voiced

receptionists and other phone answerers who can't even spell enunciate, much

less do it. Then - after I tell them that I am very hard of hearing and cannot

use my hearing aid with the telephone, and ask them to speak slowly and

distinctly, they immediately begin YELLING.

I have many times wondered if we who are profoundly hard of hearing should have

some kind of identification " badge, " maybe an ear with the sloping line drawn

through it on a bright red button. But then, that would probably only lead to

having people YELL at us. I did go to a Wal Mart recently and deliberately went

through the check out line that had a large sign posted at the checkout stand.

It read: " I have a cochlear implant. Please speak slowly and distinctly so

that I can better understand you and give you a pleasant smile. " I had NEVER

seen such a sign before.

Our government has been very proactive in making all aspects of people's lives

" handicap accessible, " but they have shown absolutely NO interest in considering

what it is like for a profoundly hard of hearing person to live in a world

populated mostly by people who hear well. The business world has not shown any

more interest. When's the last time you saw a movie in a theater that had

closed captioning? There are many more examples. Or listened to a voice on

voice mail hell that spoke slowly and distinctly? Etc., etc.

No, I'm not on a pity party. I am d***d angry about it. The notion of

" reasonable accomodation " completely ignores the profoundly hard of hearing.

Even the term " aurally challenged " is just a term I think I made up. I've never

seen it used. Just as life has been made easier for people with other

handicaps, life could be made easier for those of us who have difficulty

understanding the miserable speech habits of most people.

Don C

[Guest guest]

We live in a rushed world. But if I were in your shoes, I would use

pen/paper or a pocket TTY to aid communicating, and the relay as needed.

Since the CI does have limitations, other techniques of communications can

be useful.

Re: Re: 2015:a cochlear odyssey

>

>

>

> As far as closed captions, canes/dog guides, etc. are concerned, universal

> access does not cure the attitudinal barriers we face here in the States

> and

> worldwide.

>

> Comparisons in these matters are innately subjective, but I have a strong

> opinion that being profoundly hard of hearing (aurally challenged???) is

> one of the most onerous handicaps a person has to deal with.

>

> Most people would never think of insulting expecting a paraplegic by

> asking him to climb a set of stairs or to do any one of thousands of

> things " normal " people can do. But there is no visible " sign " of being

> profoundly hard of hearing (unless they see your hearing aids, in which

> case most assume that, with them, you hear just fine. So we deal

> constantly with people who expect us to do the impossible, like

> comprehending what a fast talking person is saying, or understanding what

> the weatherman is saying because they NEVER caption their part of the news

> program. (I met with the CEO of a local TV station a couple of years ago.

> He took me on a nice tour of the station and then said he " would try " to

> get the weatherman to write a script. It never happened.

>

> Only a few days ago a guy I was trying to do some business with on the

> cell phone sarcastically said " SHIT! " when I asked him to repeat what he

> had said a couple of times. And he KNEW I was quite hard of hearing

> because my wife had told him so BEFORE telling him to call me. Then

> there's the cutesy-voiced receptionists and other phone answerers who

> can't even spell enunciate, much less do it. Then - after I tell them

> that I am very hard of hearing and cannot use my hearing aid with the

> telephone, and ask them to speak slowly and distinctly, they immediately

> begin YELLING.

>

> I have many times wondered if we who are profoundly hard of hearing

> should have some kind of identification " badge, " maybe an ear with the

> sloping line drawn through it on a bright red button. But then, that

> would probably only lead to having people YELL at us. I did go to a Wal

> Mart recently and deliberately went through the check out line that had a

> large sign posted at the checkout stand. It read: " I have a cochlear

> implant. Please speak slowly and distinctly so that I can better

> understand you and give you a pleasant smile. " I had NEVER seen such a

> sign before.

>

> Our government has been very proactive in making all aspects of people's

> lives " handicap accessible, " but they have shown absolutely NO interest in

> considering what it is like for a profoundly hard of hearing person to

> live in a world populated mostly by people who hear well. The business

> world has not shown any more interest. When's the last time you saw a

> movie in a theater that had closed captioning? There are many more

> examples. Or listened to a voice on voice mail hell that spoke slowly and

> distinctly? Etc., etc.

>

> No, I'm not on a pity party. I am d***d angry about it. The notion of

> " reasonable accomodation " completely ignores the profoundly hard of

> hearing. Even the term " aurally challenged " is just a term I think I made

> up. I've never seen it used. Just as life has been made easier for people

> with other handicaps, life could be made easier for those of us who have

> difficulty understanding the miserable speech habits of most people.

>

> Don C

>

>

[Guest guest]

<<But if I were in your shoes, I would use pen/paper or a pocket TTY to aid

communicating>>

,

I couldn't agree with you more! After I was diagnosed with severe to

profound hearing loss in 1995, I started learning alternative communication

techniques to use in situations where I could not hear. This included use of

the TeleBraille, a raised print/Braille alphabet card, Tellatouch and print

on palm. All of these techniques have literally saved the day when I could

not hear well enough to communicate. Learning these techniques before I

actually needed to use them also allowed me to better prepare mentally for

further hearing loss. As my hearing continued to decline, I didn't spend

time wondering how I would maintain my independence. Instead, I used these

communication techniques when needed and became more of a self advocate as a

result.

That being said, I do agree with Don's point about the difficulties

resulting from severe/profound hearing loss/deafness being an invisible

disability. Because people cannot always see hearing aids or an FM system,

they won't always know that you have a hearing impairment. Also, if your

speech is good (like mine is), people automatically assume that you can hear

well. I've been complimented many times on the clarity of my speech. In

fact, many people do not realize that I have severe-profound hearing loss

until I tell them or they notice my interpreter or captionist.

Implanted: 12/22/04

Activation date: 1/18/05 (23 days and counting!)

Deafblind/Postlingual

BTE hearing aid user 19 years

Severe-profound hearing loss 9 1/2 years

[Guest guest]

,

A hard-of-hearing friend who suddenly became deaf in his early teens said

the same to me, " How can you live with DeafBlindness? I'd commit suicide. "

While I knew he had a hard time dealing with the deafness itself, it still

upset me to hear this when I myself was DeafBlind.

Re: Re: 2015:a cochlear odyssey

>

> Just wanted to clarify a point made in my last post. I don't blame others

> for having a real fear of deafblindness -- especially for a D/deaf person

> who relies on their vision for communication and safety. When I was told

> that I had and would continue to lose my hearing, I was scared to death.

> What shocked me was the comment made by someone who said that if they ever

> lost their vision and hearing, they would commit suicide. I don't blame

this

> person for feeling this way (after all, losing my hearing was one of the

> most difficult losses I've had to face in my life), but I was surprised

that

> this person said this directly to me. For fear of this being considered

> off-topic, I will refrain from further comment.

>

>

> Implanted: 12/22/04

> Activation date: 1/18/05 (24 days and counting!)

> Deafblind/Postlingual

> BTE hearing aid user 19 years

> Severe-profound hearing loss 9 1/2 years

>

>

>

>

>

>

[Guest guest]

,

My experience is different from yours. I was born with a moderate to severe

hearing loss and relatively normal sight. I grew up speechreading without

hearing aids for the first 18 years of my life. By about 7 years the night

blindness kicked in, followed by gradually reducing visual fields, though my

central vision was good until about 48. With my dog guide to compensate for

my reduced visual fields, my good central vision made it possible for us to

travel anywhere by ourselves. While my first choice would be to have normal

sight and hearing, my next preference would be to have my sight back.

Re: Re: 2015:a cochlear odyssey

>

> ,

>

> Actually, Deaf Culture does not view deafness as a disability. They are

> proud to be Deaf. Most congenitally blind people like myself feel the same

> way about blindness. That is, we do not have any wish to see. If I had to

> live my life all over again, I would not choose to see normally because

I've

> grown accustomed to life as a blind person through reading Braille, using

a

> cane/guide dog, etc. Being blind is as normal to me as not being able to

> hear is for someone who was born Deaf. The only exception concerns my

> hearing since this is a sense I need to rely on for my own safety and

> independence. I was born hearing and want to hear again.

>

>

> Implanted: 12/22/04

> Activation date: 1/18/05 (24 days and counting!)

> Deafblind/Postlingual

> BTE hearing aid user 19 years

> Severe-profound hearing loss 9 1/2 years

>

>

>

>

>

>

[Guest guest]

,

I gave up on my Telatouch. The dots get stuck, and I got tired o shipping

it to fix the cell. I'm trying to get a Screen Braille Communicator.

Re: Re: 2015:a cochlear odyssey

>

> <<But if I were in your shoes, I would use pen/paper or a pocket TTY to

> aid

> communicating>>

>

> ,

>

> I couldn't agree with you more! After I was diagnosed with severe to

> profound hearing loss in 1995, I started learning alternative

> communication

> techniques to use in situations where I could not hear. This included use

> of

> the TeleBraille, a raised print/Braille alphabet card, Tellatouch and

> print

> on palm. All of these techniques have literally saved the day when I could

> not hear well enough to communicate. Learning these techniques before I

> actually needed to use them also allowed me to better prepare mentally for

> further hearing loss. As my hearing continued to decline, I didn't spend

> time wondering how I would maintain my independence. Instead, I used these

> communication techniques when needed and became more of a self advocate as

> a

> result.

>

> That being said, I do agree with Don's point about the difficulties

> resulting from severe/profound hearing loss/deafness being an invisible

> disability. Because people cannot always see hearing aids or an FM system,

> they won't always know that you have a hearing impairment. Also, if your

> speech is good (like mine is), people automatically assume that you can

> hear

> well. I've been complimented many times on the clarity of my speech. In

> fact, many people do not realize that I have severe-profound hearing loss

> until I tell them or they notice my interpreter or captionist.

>

>

> Implanted: 12/22/04

> Activation date: 1/18/05 (23 days and counting!)

> Deafblind/Postlingual

> BTE hearing aid user 19 years

> Severe-profound hearing loss 9 1/2 years

>

>

>

>

>

>

[Guest guest]

,

I'm glad I'm not alone with these kinds of comments being made. Why people

say the things they do amazes me. I often tell people that attitude can be a

bigger disability than being unable to see or hear. If I had the attitude of

some sighted-hearing people, I wouldn't *want* to see or hear.

Implanted: 12/22/04

Activation date: 1/18/05 (23 days and counting!)

Deafblind/Postlingual

BTE hearing aid user 19 years

Severe-profound hearing loss 9 1/2 years

[Guest guest]

,

If I had the same background as you, I'd feel the same way. As you know, I

used to co-facilitate a support group for the deafblind at my local

deafblind center last year. I always told my clients that the secondary

disability is usually the hardest one to accept and adjust to. Most of my

clients who were born deaf had a harder time accepting vision loss and

blindness while those born blind had a more difficult time accepting hearing

loss or deafness. In my case, blindness has always been a part of my life,

so it was one less disability I had to adjust to. However, as my hearing

became worse, it began to negatively affect my travel to the point where I

could not cross streets safely. When I received my second guide dog (Tigger)

in 1997, she was an absolute Godsend because she is what allowed me to

continue traveling on my own despite the fact that I couldn't hear traffic.

I also found myself relying on Braille more than I ever did before since I

could no longer hear well enough to use talking books. I'm thankful for the

alternative training I received. According to my advisor in the deaf/hoh

program at my university, my knowledge of Braille allowed me to continue my

education without having to learn a new way of reading and writing.

Implanted: 12/22/04

Activation date: 1/18/05 (23 days and counting!)

Deafblind/Postlingual

BTE hearing aid user 19 years

Severe-profound hearing loss 9 1/2 years